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13 Oct 2004 : Column 101WH—continued
Hospice Movement
2 pm
Bob Spink (Castle Point) (Con): I begin with a quote, Mr. McDonald.
Mr. Deputy Speaker (Mr. John McWilliam): Order. That was not even close. My title is Mr. Deputy Speaker, but my name is McWilliam.
Bob Spink : Thank you, Mr. Deputy Speaker. The quote is as follows:
"Our visits to Little Haven give us relief from some of the pressures we have to face all the time. It is very difficult to have a normal family life.
Looking after Betty is extremely demanding, but we want to spend as much time with her as we can. She is so precious and we don't know how long she will be with us."
The quote is from one of the families who use Little Haven hospice in my constituency.
I wish to start by thanking Mr. Speaker for kindly selecting the hospice movement as the subject of our discussion. This is a very important debate and I thank sincerely all hon. Members who have taken the trouble to come along to the Chamber this afternoon. I shall focus on the children's hospice movement. I shall be as brief as I can—about 10 to 15 minutes, depending on interventions—because there are so many hon. Members present who are much more eloquent and expert than me in such matters and they deserve to have time to speak.
I wish to thank Andy Smith, chief executive of Little Haven, who has contributed greatly to what I have to say. Indeed, I thank all who are involved in the hospice movement: those concerned with medical matters, domestic matters, management matters, voluntary support and, of course, the fundraisers. I hope that my family never need their help but, if they do, I know that the hospice movement will be there for them.
Funding is one of the key issues in the hospice movement. Children's hospices receive 5 per cent. statutory funding. Little Haven in my constituency receives 1.9 per cent. funding from statutory sources, leaving almost all the funding it needs having to be collected from the voluntary sector. Thankfully, we have a wonderful voluntary support sector locally and excellent campaigning local newspapers whose editors, Martin McNeill and Steve Neale, do all they can. We receive support from local businesses such as BP and the three Conservative clubs in my constituency. The Hadleigh, Canvey Island and Benfleet Conservative clubs raise money for the hospice virtually every year. We receive support from the schools; the whole community mucks in to do what it can to support such a wonderful movement.
The fact is that hospices need 40 per cent. statutory core funding. I wish to refer briefly to the special case of motor neurone disease. We have a wonderful MND association in south Essex with great people. People with MND need palliative care to maximise the time and quality of the time that they have left. Readily available high-quality services can significantly improve people's quality of life, but many people who are diagnosed with MND will, of course, live long, fulfilled and happy lives, giving joy to themselves and those around them. Sadly,
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however, half those people will die within 14 months, so it is important that palliative care is available early in the process to those who have this particular disease.
Access to palliative care is generally low and varies depending on diagnosis, with priority given to people with cancer. That brings me to Marie Curie Cancer Care. It is a wonderful organisation and I pay tribute to everyone connected with it. Marie Curie provides specialist palliative care for about 24,000 people a year in the United Kingdom. The organisation runs 10 hospices in the UK, but perhaps it is best known for its 2,500 Marie Curie nurses who provide care for people in their homes.
About two thirds of people would prefer to die at home. About a quarter of people would prefer to die in a hospice and fewer than one in 20 would prefer to die in a hospital. However, most people die in hospitals, although this is clearly a matter in which personal choice should rule the day, whenever possible. Marie Curie helps to give that choice, and God bless it for that.
In July 2004, the Health Committee published a report on palliative care whose two key recommendations were on funding and access. Access is patchy at best and works against those in less affluent areas. Both Marie Curie Cancer Care and the Motor Neurone Disease Association believe that access should be available to everyone who needs it regardless of diagnosis or postcode; currently, it is not. I know that the Minister is a very good lady, and that she is listening carefully and will address these points.
Little Haven in Castle Point is one of 35 children's hospice services in the UK. They help children with life-limiting conditions, as well as the families of those children. In the UK, there are 15,000 to 20,000 children with such conditions, most of whom will not live to adulthood. The daily toll of caring for a child with a life-limiting condition needing 24/7 care places a huge emotional, physical and financial strain on the whole family.
David Taylor (North-West Leicestershire) (Lab/Co-op): The hon. Gentleman refers to the fact that there are 35 children's hospices in the UK—one of which is the Rainbows children's hospice in Loughborough in the constituency of my hon. Friend the Member for Loughborough (Mr. Reed), who is my neighbour. In the points that the hon. Gentleman is about to make, will he press the Minister to take a closer look at what the Government say about funding? They say it is the responsibility of PCTs to negotiate agreements, but the number of PCTs, as well as the fact that children's hospices are so specialist and their catchment area so large, makes that proposition unviable. Does the hon. Gentleman accept that?
Bob Spink : I do. The hon. Gentleman is a great campaigner for the hospice movement—he supports his local hospice tremendously well—and he has anticipated my words. I hope he will listen carefully to what I have to say.
The daily toll of caring for children with life-limiting conditions is heavy, as care can be required 24 hours a day, seven days a week, sometimes for many years. That places a huge strain on the family. Life expectancy can vary from just a few months to a number of years, and
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the health of the child often deteriorates gradually, making them increasingly dependent on the parents and carers. The needs of such children are met in many settings, including the children's hospices, which play a key role, in partnership with other agencies, in helping to meet those complex needs and to support the whole family.
I wonder what images spring to mind when the words "children's hospice" are spoken. Perhaps they are images of unhappiness and despondency—indeed, at times there is great sadness—but children's hospices are focused on enjoying life to the full while it is there, and the children and their families experience much fun and laughter in them. They know that they are not alone. Children's hospices welcome families for a break together in a friendly and homely environment; they allow them time to be a family and to enjoy the life of their child while they can. This is a time when the burden of being the principal carers is lifted.
Children's hospices also help children and families in their own home; that is important. They offer information, practical assistance and advice. They provide a 24-hour telephone support helpline, as well as expert emergency and palliative care and advice, and they frequently make home visits. They also provide end-of-life care and, after the death of a child, bereavement support. That care meets the physical, emotional, social and spiritual needs of individual children and their families.
Children's hospices help in a way that the national health service cannot. They bring together a range of care and advice to support the whole family throughout all the stages of the child's illness, keeping children and families right at the centre of that process. The need for these services is beyond doubt. Another family that use Little Haven said:
"The support we get from the staff at the hospice is incredible, Jono is really well looked after and we meet other families in similar situations we can relate to."
Children's hospices also benefit our local communities, bringing them together with a common goal of helping others in need. A children's hospice can cost anywhere between £3 million and £4 million to build and have £1.5 million annual running costs thereafter. Almost all that money is raised in the local community. That takes unprecedented commitment and dedication.
Mr. Andy Reed (Loughborough) (Lab/Co-op): I congratulate the hon. Gentleman on securing this debate. Last Friday, I was fortunate enough to bring a group of children from the Rainbows hospice to visit No. 10, which emphasises his point about the need for a wider social aspect to this issue.
I assume that the hon. Gentleman will, quite rightly, come on to the financing of children's hospices. My hon. Friend the Member for North-West Leicestershire (David Taylor) has mentioned the PCTs, but will the hon. Gentleman concentrate some of his energies on the role of social services? Social services from across the region often use the services of such hospices, particularly those of the Rainbows hospice. They know
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that they should pay, but get away with not paying because the fundraising is so good. Will he insist that social services departments pay their way?
Bob Spink : I am grateful for the hon. Gentleman's intervention and for all the work that he does in his constituency to help families with children with life-limiting conditions. That is much appreciated. I shall be addressing the Treasury rules that come into play in 2006, which state that any work done in the charitable sector that should have been undertaken by the statutory sector, or that displaces work that the statutory sector would otherwise have to do, should be reimbursed by the statutory sector. The hon. Gentleman has given me the opportunity to make that point, and I thank him for that.
John Mann (Bassetlaw) (Lab): May I say that no Opposition Member raises their constituents' interests as consistently well as the hon. Gentleman? On funding, will he pay attention to the cross-border issues that afflict constituencies such as mine, which sits in the east midlands but naturally looks to Yorkshire, including to the Bluebell Wood children's hospice in Sheffield, for hospice places for our children?
Bob Spink : I thank the hon. Gentleman for his kind words. This is one of those debates at which the House excels. A number of people who work very hard for the hospice movement, all of whom care deeply for their constituents and put party politics aside, are making contributions. I will probably use that as my final comment before finishing my speech.
I was talking about the involvement of the whole community in raising funds. Little could get me out of my bed on a cold, wet Sunday morning to run 26 and a quarter miles, but my local hospice movement did, and I was proud to take part. I recommend it to other Members. Almost all the money for children's hospices is raised in the local community, which takes tremendous dedication.
It would have been easy for me to try to score cheap political points on funding, but I will not do that. In fact, I warmly congratulate the Government and thank them for the extra funding that they are putting into the health service; I will not mention the application of such funds at this point. On average, children's hospices receive only 5 per cent. of their funding from statutory sources. I urge the Government to work in partnership with children's hospices, as they do with adult hospices, to develop a mechanism to fund a service that the state would have to provide if children's hospices were not there. That point was raised by the hon. Member for Loughborough (Mr. Reed) a moment ago.
The same principle that applies to adult hospices should apply to children's hospices. Unfortunately, it does not; the same dialogue is not taking place with children's hospices, which is a glaring anomaly. I ask the Minister to address that point today or to write to me about the matter as soon as possible.
The Government should include the children's hospice service in their funding discussions with the adult hospice sector. The national service framework for children and young people could prove to be a powerful agent in helping to achieve the necessary change.
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Although children's palliative care is a thin slice of the section on disabled children, the NSF offers a key stepping stone towards developing such services. The Government now need to ensure that the PCTs are assessing the need for children's palliative care in their locality and meeting the full cost of providing that care. That should form part of the monitoring of the NSF. I would be grateful if the Minister confirmed that that will be the case and told us how it will be achieved.
The New Opportunities Fund, now the Big Lottery Fund, has helped Little Haven and many other children's hospices. We are all deeply grateful for that, but the money runs out in March 2006. The funding has become an important mainstay of children's hospices in terms of meeting their running costs, and when that disappears in 2006, the funding situation will become very fragile.
The Government have described how children's hospices should negotiate with PCTs for statutory funding; I hope that the Minister will not dwell too long on that, as we have all heard that argument. Because of the absence of any central guidance from the Government to PCTs, the arrangement results in unacceptable uncertainty for the hospices. Children's hospices have to deal with up to 15 PCTs in any one area. That means 15 rounds of negotiations and 15 very variable possible outcomes. That is not good enough, as it consumes valuable hospice resources.
We need the Government to focus on that and to ensure that the process is streamlined and clarified for everyone's sake. Children's hospices are not looking for an easy life; they simply want a fair deal, practical help and support in finding their way through the funding maze, so that they can concentrate on what they were set up to do.
The Minister is a good Minister. I said that before, and I really mean it. She knows that, as a society, we need hospices. I hope she accepts that and will do what she can to support them in terms of funding and access.
David Taylor : A Minister under the Conservative Administration, the right hon. Member for South-West Surrey (Virginia Bottomley), stated:
"The Government's objective is to work towards a position in which the contribution from public funds available to voluntary hospices and similar organisations matches that of voluntary giving."—[Official Report, 15 December 1989; Vol. 163, c. 847W.]
I hope that this Government pick up that objective and run with it. Does the hon. Gentleman agree?
Bob Spink : I am delighted with that intervention, because it gives me the opportunity to say that there is no better man in the House when it comes to fighting for the health service and for constituents than my hon. Friend the Member for West Chelmsford (Mr. Burns), who is on the Front Bench. He will explain Conservative policy on the matter.
When thinking about hospice care, it is all too easy to become distracted by age groups, buildings and disease types, but a hospice is not just a building. It is a service for adults and children, providing, for instance, care at home—a total service. There are many important differences between children's and adults' hospices, but
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they share the same vision of caring for people at their time of greatest need. Help the Hospices and the Association of Children's Hospices have called on the Government to appoint a Minister for palliative care. That Minister's role would be not only to join up policy on palliative care for children and adults, but to co-ordinate a cross-departmental cross-sector strategy to support people coping with death.
We all value our hospices. They are a jewel in the health service crown.
Lady Hermon (North Down) (UUP): I congratulate the hon. Gentleman, as other hon. Members have, on securing this debate.
The hon. Gentleman referred to cross-departmental responsibilities. Is not one of the key issues for hospices the amount that VAT takes out of their budgets? Is it not time that the Government made all children's and adults' hospices exempt from VAT?
Bob Spink : The hon. Lady makes a fair point, and one that I intended to address, although I failed to do so. I am grateful to her. No doubt the Minister will deal with the matter.
We know that hospices are very important. As a hospice user put it:
"We know that while we are at the hospice we are in safe and knowledgeable hands—and so do our families".
Let us work together in Parliament, cross-party, to get this right.
Mr. Deputy Speaker : Order. Many Members are trying to catch my eye. If speeches are brief, I can get everyone in; if they are lengthy, I cannot.
2.19 pm
Jim Dobbin (Heywood and Middleton) (Lab/Co-op): I congratulate the hon. Member for Castle Point (Bob Spink) on securing this debate. He has an excellent record of speaking on behalf of the vulnerable in society, and he did so just a moment ago.
Palliative care has long been the poor relation in terms of publicity and funding in the NHS. As we are now aware, more people will be living longer due to improvements in medicine and a better standard of living; as a result, we are also aware that more people will require palliative care. Therefore, the NHS has taken more responsibility for funding. In the past, hospices were funded totally by voluntary contributions, but with the realisation that the number of people needing palliative care was increasing, the NHS had to accept that responsibility—quite right too. Palliative care services were provided in some hospitals, but the voluntary hospices were still essential to supply the total need. We know that fundraising is essential to the upkeep of the many voluntary hospices.
The management and volunteers at the local Springhill hospice in Rochdale, which serves my constituency—and serves it so well—have come up with ever more innovations to persuade people to part with their money in the worthiest of causes. There is, for example, the annual man and woman of the year
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luncheon, at which it raises a huge amount of money. I am on one of the committees that organises those events, which are very enjoyable and raise the awareness of the local community. There are concerts, tug-of-wars, sponsored walks and bike rides, auctions, coffee mornings, fairs and other entertainments enjoyed and supported by all in the borough. There is a hospice shop, staffed and run by volunteers, which supplies everything under the sun.
One cannot fault the hard work and commitment that have been put in over the years to keep the hospice movement going as a vibrant, irreplaceable service in the area. I was a member of the local health authority when another member, Margaret Geohagen, started the hospice. It is to her credit that she did so, and she is still its chair.
There is a constant headache of achieving targets each year. Hospices are the victims of their own success. They are now providing specialist palliative care at home and in the hospice; they are providing respite care to give carers a necessary break; they are providing care for families of patients; and, at the same time, they have to deal with the upkeep and refurbishment of the buildings and grounds.
The NHS contributes about a third of the funding of palliative care, as I understand it, in adult hospices run by local charities. The National Institute for Clinical Excellence guidelines suggest that the NHS should commission palliative care services, but that providers may come from the independent sector. The Treasury recommended that all Departments should ensure that the price of contracts reflects the full cost of the service, with a deadline of April 2006. I understand that the Charity Commission states that a charity should not use its resources to supplement what the public bodies should provide, so the NHS should fund the costs of providing palliative services. Hospices should be using their funds to supplement and improve the services funded by the NHS.
I receive letters from my local hospice suggesting that it is not yet receiving the full cost of the service as described by NICE, and there is a bit of uncertainty over its future budgets. Primary care trusts will need to be sure that they are assessing correctly the special palliative care needs in their areas and they must ensure that all such needs are met.
Mrs. Lorna Fitzsimons (Rochdale) (Lab) rose—
Mr. Deputy Speaker : Order. Before I call the hon. Lady, may I remind Members of the rule about reading? Copious notes are allowed, but reading is not. The hon. Member for Heywood and Middleton (Jim Dobbin) appears to be on the first page of his notes. I did advise that Members should be brief.
Mrs. Fitzsimons : Thank you, Mr. Deputy Speaker.
I thank my hon. Friend the Member for Heywood and Middleton for giving way. As the neighbouring constituency MP, my constituents are also served well by Springhill hospice. First, does he agree that there is a role that has not yet been used by the strategic health authority, whereby many hospices serve many PCTs in that the PCTs all—equally and separately—fund what
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they are meant to fund, rather than putting the weight on one or two PCTs that are fully apprised of the value of the hospice movement?
Secondly, will my hon. Friend add his praise to mine for the hospice movement for the work it does in the palliative care networks? We know the value of the work that the movement does for people in homes and in the hospices, but the problem is the plight of people who have to suffer in hospitals and do not get the same palliative care. The movement has been leading in finding a way to train of lots of nurses in palliative care on the wards.
Jim Dobbin : I accept the points that my hon. Friend is making. She represents a seat in the same borough, so she knows the hospice that I am talking about. I also accept your guidance, Mr. Deputy Speaker. The point that I am coming to is that one Minister needs to be given responsibility for the full provision of palliative care for adults and for children's carers and providers. I want to come to a close, because you have asked us to be brief and more hon. Members want to speak. I pay tribute to the voluntary ethos of the hospice movement and to its dedication to raising funds to keep itself going.
I appreciate all the work that the Government are doing. I ask them to focus a bit more on the financial needs and the financial supports of the hospice movement, particularly the support given to children's hospices throughout the country. There is a dearth of support in that area. That needs to be examined.
2.26 pm
Mr. David Amess (Southend, West) (Con): I congratulate my hon. Friend the Member for Castle Point (Bob Spink) on securing this debate; I agree with everything he said. I suppose I could sit down immediately, but there are one or two points that I wish to make.
This is not a party political matter; no political party invented hospices. Dame Cicely Saunders has led the movement and I applaud everything she has done. As a member of the Committee that considered the Bill that enabled primary care trusts to come into existence, I say to the Minister that I and many other colleagues made many points about funding at that stage. I hope she will address the issues, specifically funding, as the primary care trusts are expected to deliver practically everything, but that is not quite working as the Minister had told us all.
My hon. Friend the Member for West Chelmsford (Mr. Burns) and I have the privilege of serving on the Health Committee. I am delighted that my hon. Friend the Member for Castle Point mentioned our report on palliative care and I know that the Minister gave evidence to us.
The Committee was briefed by Dr. Keri Thomas that patients had little real choice about how they would spend their last days. We were told that
"though most of the final year of life is spent at home, most patients still die in hospital."
Will the Minister address that in terms of the back-up service? Locally in Southend, we have a wonderful organisation called SPDNS, which is led by John and
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Rosalind Matty. They have celebrated 25 years of trying to help people die with dignity at home. However, there are other challenges in terms of getting the necessary staff support to give people the opportunity to die at home if they so wish.
As my hon. Friend said, we are served by three wonderful hospices locally: Little Haven, Fair Havens and St. Luke's. When I was first elected to Parliament in 1983, I knew little about the hospice movement, although I knew about St. Joseph's hospice in Hackney. Within a year, I had celebrated my second miracle in my then constituency—the first was to be elected—which was to be given the great honour of laying the foundation stone of St. Luke's hospice.
That came about through a wonderful lady called Trudy Cox, who was a district nurse. She was called to attend a house, thinking that the person concerned was ill. She walked into the bedroom and the mother lay dead in the bed with her children around her. She said that, after that, she was determined that no one should ever die in those circumstances again. She called a meeting and said that she was not going to argue with the Government about funding, but that she would mortgage her house and there would be a hospice. Within a short time, and with no huge benefactors, St. Luke's hospice was built. It does a wonderful job, just as Little Haven and Fair Havens do.
The adult hospices in England and Wales have given all hon. Members the same briefing. Mine is a tiny contribution in terms of what the Minister might respond to, because she will know that that movement wants full cost recovery. It feels strongly that primary care trusts are required to fund sufficient services to meet local need but that they are not delivering on that. It also feels that commissioning sufficient services for its population should happen in reality and the hospices should not be necessarily left to fill all the gaps.
As the hon. Member for Heywood and Middleton (Jim Dobbin) said, Government leadership and strategy are very important. The adult hospice movement wants the Government to ensure that there is one Minister with responsibility for joining up palliative care policy across diagnosis for adults and children, working closely with palliative care providers and patient and carer organisations. It also feels that there should be integration with existing quality programmes and streamlining of statutory inspections. We have only to think of our schools being inspected by Ofsted to know how disruptive such a process can be for all concerned.
All Members of Parliament support their local hospices and wish to be associated with their local hospice movement, but I hope that the Minister will deal specifically with how primary care trusts can address the current funding difficulty.
Mr. Deputy Speaker : Order. I thank the hon. Members who have spoken thus far; they have been exemplary. I call David Taylor.
David Taylor : I do not want to speak.
Mr. Deputy Speaker : Sorry, I thought you did. I call Martin Linton.
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2.32 pm
Martin Linton (Battersea) (Lab): Thank you, Mr. Deputy Speaker. I am sure that my hon. Friend the Member for North-West Leicestershire (David Taylor) will make some excellent contributions to the debate.
I thank the hon. Member for Castle Point (Bob Spink) for applying for the debate because it gives us a chance to discuss the needs of the hospice movement. He has mentioned the Little Haven children's hospice so often that it must have become the most famous hospice, at least among fellow Members of Parliament. I hope to do the same for the Trinity hospice, which was established in 1891, making it the oldest in the United Kingdom. Its catchment area is the whole of south- west London, which has a population of some 750,000 people.
My constituency is at the centre of that catchment area and, although the hospice itself is a few yards outside my constituency, I have good links with it. Those links have become much firmer since April when, like the hon. Member for Castle Point, I ran the marathon as part of the hospice team to raise money for it. I had two targets: one was related to how quickly I could get to the finish, which I just about met, and the other was to try to raise £1,500 for the hospice. I am glad to say that I achieved that, thanks to the generosity of local people and the fact that, as soon the Trinity hospice was mentioned, so many people said, "I just don't know how I can thank that place enough for what it has done for my family." I was able to say to them, "It's easy, you can sponsor me in the marathon." Many people did so and I was able to raise nearly three times the sponsorship target. It is sobering to discover, however, that my £4,000 will keep the hospice going for less than half a day.
Hospices such as Trinity need to fundraise because they do not get 100 per cent. funding from the national health service. As I understand it, the health service will fund the community service—there is a community team at the hospice with about 280 patients on its books—and the bed service. Trinity has about 30 beds, although it could happily double that number. However, when it comes to core needs, Trinity gets only about 45 per cent. of its funding from the health service. The funding does not in any case include complementary therapies not recognised by the NHS such as massage, heart therapy, relaxation therapy and hypnotherapy, which are excellent forms of palliative care. As a result of those two factors, the Trinity hospice gets about 35 per cent. of its funding from the NHS— £2 million out of £6 million.
Many people have mentioned the need for full funding. Talking to my local hospice, I found that it does not want 100 per cent. funding. There are a few NHS hospices in London that are 100 per cent. funded, although there are very few across the rest of the country. Trinity hospice values its independence and freedom, but like most hospices it wants an increase in the percentage of its costs that are funded through the NHS. It would warm to the suggestion made by my hon. Friend the Member for North-West Leicestershire of a 50–50 split between NHS funding and its own fundraising.
Within that general demand are several specific points that concern the hospice. I shall raise them briefly while I have the Minister's ear, so that she can comment on
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them. The first is even funding between primary care trusts. The hospice has to negotiate with seven different PCTs, and some are likely to offer a higher percentage than others. It is known that some will be in danger next year of short-changing the hospice because of their financial situation. It is important that such organisations as hospices should have the same rate of funding from all PCTs. If there is anything the Department of Health can do to ensure that those PCTs are able to give them the same funding, that will be helpful.
Another point that the hospice raises is that the voluntary sector has great difficulty matching the pay rises for NHS staff, although it has to do that. I would never argue against those pay rises, which are richly deserved, but they should be taken into account in deciding how much to fund the hospices, which have to try to keep pace with NHS increases.
Another suggestion is to work towards a system of funding per head. At present, the block grant is based on last year's occupancy and on 80 per cent. bed occupancy. Trinity achieves a good 96 per cent. bed occupancy, which means that the funding it gets is underfunding. It would be far better if were Trinity funded on the basis of the bed occupancy it achieves, even if that is not 100 per cent.
The hospice has also told me that it would like three-yearly, not one-yearly, budgets. This Government have tried to follow that principle for many voluntary bodies, Government agencies, local authorities and education authorities. We can understand that hospices have an equal need for predictability and dependability in their funding. One of their aims, which they can achieve only with funding improvements, is to expand their care to illnesses other than cancer. Cancer was the original reason for most hospices coming into existence, and the bulk of the palliative care that they give is for that, but there are many other illnesses for which hospice care would be appropriate.
Hospices suffer, perhaps even more than the health service, from bed blocking. Often, that problem depends on a patient finding a nursing home place. Trinity has had examples of people who no longer need hospice care occupying a hospice bed for more than a year while they try to find a nursing home place.
In central London there is a huge problem with parking, which I as a constituency MP have helped to deal with on behalf of district nurses. People working for the hospice can pay about £500 a year for the privilege of parking in the street outside their hospice. The community team needs to be able to move freely around the boroughs to visit the 280 people on its list.
I pay tribute to the chairman of Trinity hospice for the past 10 years, Patrick Hurst. He has brought about a real revolution in the hospice's ability to deal with the demand for its places, including a new capital build plan and far greater services to the community than Trinity was ever able to deliver before. There has been an increase of about 400 per cent. in the community team, and thus a huge increase in the number of patients with whom the hospice is able to deal.
I make those suggestions in the knowledge that the Department of Health and the Government are already doing an enormous amount to help hospices through
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the primary care trusts, but this is the direction in which hospices—certainly my local hospice—would like them to move in future.
Finally, Mr. Deputy Speaker, I apologise if I have to leave a little early. My excuse is the only one that would cut any ice with you: I have to see Mr. Speaker.
Mr. Deputy Speaker : I know the feeling. I call Sir Teddy Taylor.
2.40 pm
Sir Teddy Taylor (Rochford and Southend, East) (Con): We all owe a debt to my hon. Friend the Member for Castle Point (Bob Spink) for raising this issue, as it concerns many of us. We are all aware of his total commitment to Little Haven. The great work that he does for it is well known and is, I am sure, greatly appreciated. I have had a connection with Fair Havens and Little Haven for many years as an honorary office bearer. All of us are well aware of the fantastic work done by hospices. Of course, they depend enormously on voluntary helpers—without voluntary help, it would be difficult for them to continue—and they have to raise a huge amount of money to ensure that the service is maintained.
I wish to put three brief points to the Minister. One thing that worries me enormously—I hope she will confirm whether this is true or untrue—is that, on the basis of figures I have seen, NHS funding of hospices as a percentage of total spending has decreased in recent years. That should worry us all, irrespective of the Government in power. Obviously, this can happen without people noticing. In 1996–97, 35 per cent. of funding was covered by the NHS. In 2001–02, that fell to only 29 per cent., which is a massive reduction. Since then, there has been the £50 million boost for specialist palliative care, which increased the amount to 32 or 33 per cent. However, we should be aware that that percentage of total spending is still less than it was in 1996–97. That should worry us all.
The hospices in the Southend area and in Castle Point are very fortunate to receive enormous contributions from the local communities, but hard work is required to maintain them and, as expenditure is constantly increasing, that is no easy task. My first question is, does the Minister accept that funding has been reduced and that there is a need to increase it?
Secondly, does the Minister accept that funding for children's hospices is tiny compared with the funding available to hospices generally? Only about 5 per cent. of total funding is provided from public funds, which is very low indeed. In the case of Little Haven, the figure is only 1.9 per cent. When we have had problems in the past, Governments have said to us that there are things we can do. For instance, we can request lottery funding, which has been greatly appreciated. A special fund has been set up, but the plain fact is that it will fall out and stop in 2006.
The main guidance has been that we should go to the primary care trusts. A delightful lady runs one for us in Southend, but there are so many PCTs that it really is a bit confusing. Some hospices have to deal with three, four, five or—in the case mentioned by my hon. Friend the Member for Castle Point—15. Trying to get straight guidance from them on how funding should be provided
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is almost impossible. The Government really need to give clear indications or rules to PCTs as to what funding they should provide for children's hospices. It is no good at all to leave that to discussions. We appreciate that PCTs have a bit of a nightmare, as do all organisations in the health service, in covering all their costs. Therefore, we need a commitment to additional spending and a clear promise that the PCTs will be advised on suitable funding.
Mr. Lindsay Hoyle (Chorley) (Lab): Further to the hon. Gentleman's last point, I have a children's hospice in Chorley—Derian House suffers in respect of funding from PCTs. The local PCTs give money, but young children come from as far away as London or Scotland and may make a one-off visit this year, or perhaps in three years, so their PCT never contributes.
The hon. Gentleman is absolutely right that children's hospices have always been the poor relation in funding. Does he agree that we ought to have more funding directly from the Secretary of State, or in another way, if funds cannot be channelled through the PCTs equally?
Sir Teddy Taylor : The hon. Gentleman expresses my feelings exactly. I would much prefer to have straight funding from the Government, due to the confusion in the system with all the PCTs. That would be infinitely better as it would clear up a lot, but, on the other hand, we do not want to interfere with the powers given to PCTs because they are very sensitive.
I agree with the hon. Gentleman. If that proposal were possible, great; if not, PCTs should have some clear guidance on the funding needed.
Mrs. Fitzsimons : Does the hon. Gentleman think that the target set by the Government for funding child and adolescent mental health—guidance referring to a non-ring-fenced target of 10 per cent. growth year on year over the next three years—is a good example? That has been met by nearly all PCTs. Would he recommend that formula to the Government?
Sir Teddy Taylor : That is something for the Minister to consider, because it is far too complicated for me. We need straight indications that, because of the reduction that has taken place, there will be an increase and that PCTs will be given clear guidance. The hon. Lady has mentioned something important that the Minister will need to examine, but I am looking for those two straight pieces of guidance.
I hope that when the Government work out such things as the inspections that are taking place, they will bear in mind the burdens on those running a hospice. Some of our schools have different views on inspections: those that get good reports think they are a wonderful idea while those that get bad reports think they are a very unusual system.
For hospices, the real problem is the time taken up by inspections. My understanding—the Minister can tell me if I am wrong—is that we have two organisations undertaking the inspections; they do not attract much notice and they take up a huge amount of time. Quite honestly, when people have the job of running a hospice,
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particularly when they depend a great deal on voluntary work, having two such inspections is bad. Surely, through the simplification of democracy, we could have one organisation, and only one, to carry out the inspection. If a hospice gets a good report and is clearly well managed, there should be some means whereby a gap between inspections is introduced for it compared with others.
I hope that the Minister appreciates the huge burdens that hospices have to bear and the enormous task of fundraising undertaken by volunteers. I also hope she realises that problems could arise unless something is done. Many people spend a great deal of time and effort on ensuring the continued operation of hospices, but they need additional help.
The Minister will be aware that the only guidance she has had from Members present is that something should be done. I hope she can provide some guidance. All of us present appreciate the special interest taken by my hon. Friend the Member for Castle Point, and we thank him for giving us the opportunity to raise these important issues.
Mr. Deputy Speaker : Order. If Members are brief, I can get one or possibly two more speakers in. Ignore the annunicator; we know what we are talking about.
2.48 pm
Mr. Andy Reed (Loughborough) (Lab/Co-op): Thank you, Mr. Deputy Speaker. I am glad that you said that before I rose to speak and I hope that you feel that way at the end.
I will be brief because much has already been said. I probably need only clarify. I am grateful to the hon. Member for Rochford and Southend, East (Sir Teddy Taylor) for homing in on where we can make progress.
I have asked questions and raised this issue particularly in relation to children's hospices. The Rainbows hospice in my constituency is only 10 years old; it was 10 years old last month. It has celebrated great growth in that time, and it continues to want to grow. It is a happy place. The first time I visited, I was rather nervous, thinking that it would be a deeply depressing place, but far from it. I had my photograph taken in the ball pit with some of the children, and we really enjoyed ourselves. I left with mixed emotions of joy and an understanding of what a hospice is really about. The hospice serves many PCTs and has exactly the same problems as those already mentioned.
I want to raise the specific problem that occurs when social services departments use the hospices. The county council passed a motion supporting a campaign run by the local newspaper and me, until I wrote to the council to say, "Congratulations on supporting the campaign to fund the Rainbows hospice. If your social services department were to pay up, it would make some difference." I have still not had a reply to that letter, strangely enough. Perhaps today's debate will trigger the county council to deliver some of the cash. It uses the services; it needs to pay.
The matter comes down to the specific issue about guidelines. Like most Members, I have spoken to my local PCT. I encouraged all the Members I know in the
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east midlands to do that. The PCT will say, "Yeah, we totally agree. We should be funding children's hospices." It is wonderful, is it not? However, when it comes to the detailed negotiation, the money is not there, or it is not the priority at that time. The Department of Health will say, "It is a priority and the PCT should be funding it", and we get caught in a muddle.
The only way forward is if we establish some guidelines and guidance that, while not exerting extreme pressure, make it clear to PCTs and to social services departments that use those facilities for health matters that we expect them not to pay 100 per cent. but to pay the 40 per cent. that we estimate is used to provide health service care at our hospice. PCTs should just pay their way. That is not a Stalinist diktat from the centre. We need some simple guidelines that make it clear to every PCT in the country that it ought to pay its fair share.
I congratulate everyone at Rainbows on their hard work in raising £1.5 million every year. What a daunting prospect it is to wake up every 1 April knowing that one needs to raise another £1.5 million, but every year they do it. Fortunately, I did not have to do a marathon. They are going to get me to jump out of an aeroplane with a parachute. Suddenly, the marathon sounds a lot more enticing.
2.51 pm
Sue Doughty (Guildford) (LD): I thank the hon. Member for Castle Point (Bob Spink) not only for securing the debate but for covering so many of the important points that we came along to make. I will try not to repeat any more than is necessary to make my points.
St. Christopher's hospice opened in my constituency not long after I was elected. There is a history of concern about primary care trust funding for hospices. I hope that, by the time that we go into the next election, we will have resolved the issue. Three and a half years ago, the hon. Member for Putney (Mr. Colman) and I went to see the then Minister in charge of children's care, the Under-Secretary of State, Office of the Deputy Prime Minister, the hon. Member for Pontefract and Castleford (Yvette Cooper). We discussed two issues: the difficulty in securing PCT funding and regionalisation.
After that meeting, we all came away feeling that we needed stronger guidelines—particularly with children's hospices—about regional cover. Otherwise, we end up with fundraising in adjacent areas almost in competition. There is a problem and it needs to be dealt with.
We did not get very far though—nothing much happened on the funding that we hoped for—so, in October 2002, I wrote to the next Minister. By March 2003, another Minister was in place. I was fortunate to secure an Adjournment debate in May 2003 and the Minister made it clear that PCTs should contribute. At that point, I made the history clear—the fact that the chief executive of my local children's hospice had been round the PCTs and not succeeded. However, I was
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again given the advice that the PCTs should contribute. Since then, the chief executive has been round again and not succeeded. I tell that story to make it clear that people have been trying to resolve the issue for a long time.
I invite the Minister to visit St. Christopher's hospice. We invited the Minister for Children, Young People and Families, the right hon. Member for Barking (Margaret Hodge), and she said that it was not her job. It is important that a Minister visits to look at the brilliant work that is being done by St. Christopher's. I am sure that it is on a par with what is being done across the country.
The important thing is the justice of the issue. We talked about where the Government should play their part. I agree with Members who suggested that we should have a Minister with responsibility for palliative care. We all have huge fundraising efforts. In my area, Standard Life Healthcare, Allianz Cornhill and the cricketer Adam Hollioake do huge amounts of work, as do lots of ordinary people. However, they should not be doing it in the knowledge that the Government are not stepping up to the mark. We are looking not for 100 per cent. funding—hospice care is different from hospital care—but for funding to provide those elements that the national health service would provide if the hospice were not there. That is a matter of justice. I hope that we get it. I would like to go into the next general election knowing that we have got that point nailed once and for all.
2.54 pm
Mr. Paul Burstow (Sutton and Cheam) (LD): I congratulate the hon. Member for Castle Point (Bob Spink) on securing this important debate, and commend the many contributions that have been made in the debate and the points that have been made to the Minister. I want to illuminate and add to some of those points and to ask the Minister some questions to which the debate begs answers.
The need for such services is beyond doubt and, like the hon. Gentleman, I cannot miss the opportunity of expressing my appreciation of the work of the hospice in my constituency. St. Raphael's hospice covers the population in my constituency and that of Merton borough. It has a fantastic team of staff and an extraordinary team of volunteers, who go out of their way to make a difference to the quality of life of patients and families who are struggling to cope with the difficult circumstances that brought them to the hospice. Two hundred and fifty volunteers play a part in that hospice and I take my hat off to them for their efforts.
The local paper, the Sutton Guardian, recently launched a campaign to raise £50,000 to expand the services provided by St. Raphael's hospice. In less than three months, it hit the halfway mark, which indicates how powerfully hospices move local populations, how strongly people feel attached to them and how much people are willing to dip into their own pockets to ensure that their hospice survives, thrives and continues to support people in the local community.
That brings me to the first and key question of funding. Will the Minister tell us something about the road map for realising the Treasury cross-cutting review of the voluntary sector? That review was published in
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2002. As we have heard, it said that, when there is a statutory responsibility for a service, even if it is provided within the voluntary sector, there is a requirement for full reimbursement of costs. What is the plan to ensure that that conclusion, which the Treasury reached in 2002, becomes reality by 2006?
Clearly, it is not appropriate in the long run—it is not defensible even now—that hospices rely on charitable and lottery funding to pay for services that would be free if they were provided within the NHS. Trustees have a legal duty not to use charitable money for such purposes and, given what the Treasury has said, there will come a point when the Charity Commission will have to step in to question whether the level of funding is adequate to meet the need.
We have had the figures showing how the level of funding for adult hospice care has fluctuated and fallen compared with the level only a few years ago. If adult hospice care is the Cinderella of services in palliative care, children's hospice care is the poor relation of that Cinderella. To have only 5 per cent. of its funding from the NHS cannot be an adequate or acceptable measure of the support that we as taxpayers should be prepared to put into such an important service.
Many hon. Members have described the lottery of PCTs accepting their responsibility in principle but not picking it up in practice. Where children's hospices seek to work out who they have a relationship in respect of planning and commissioning services and whom to talk to about the new arrangements for payment by results, how will that go forward? Surely, this is an area in which specialist commissioning has a part to play, given that it cannot be right for voluntary organisations to have to play a game of chasing multiple PCTs to find the right person to release resources.
Dr. Vincent Cable (Twickenham) (LD): I want to ask my hon. Friend a question on behalf of the Shooting Star Trust, which is just starting to open its doors as a children's hospice in my constituency. Is there a logical basis for the disadvantageous funding of children's hospices, which the hon. Member for Rochford and Southend, East (Sir Teddy Taylor) emphasised? The purpose of hospices is to provide respite care and the cost of looking after children in a hospice is often disproportionately higher. Why are children's hospices discriminated against in this way?
Mr. Burstow : In his question, my hon. Friend has put his finger on the nub of the matter. We are effectively talking about discrimination being perpetuated in the system of funding hospice care. It cannot be right or acceptable that children's hospices that provide core services that social services and the NHS want to use have to rely heavily on flag days and other fundraising devices to cover their costs.
It is vital to remember that we should focus not only on the very important work that palliative and hospice care provides for those with cancer. More than 95 per cent. of the services in hospices are concentrated on that group, but there are more than 300,000 people with degenerative and other diseases who would benefit from palliative care and hospice care. In evidence to the Select
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Committee report, the British Lung Foundation made representations about coronary obstructive pulmonary disease and people with that condition who would benefit from palliative care. We have heard about motor neurone disease and how people from that group are very fortunate if they can access hospice care. However, many do not, which also applies to those with dementia of one sort or another.
Reference has been made to social care and its role. It is incumbent upon the Government to be a lot clearer about where the line is drawn with regard to who is responsible for funding those services. I am thinking in particular of the issue of continuing NHS care, which was explored during the Select Committee's inquiry, but has not been satisfactorily dealt with through answers from the Government.
Quite recently, I asked a question to find out when the Government will be publishing their review of where strategic health authorities had got to in considering the criteria in respect of continuing care. I received an answer that did not relate at all to the question that I asked, and I hope that the Minister will give us some idea of when we shall see the outcome of that review.
During our inquiry, we were told that people were still in a situation where arbitrary time periods on when funding would be available were set by strategic health authorities. A person could be 11 weeks from death—I do not know how on earth someone comes to that judgment— and then they would get continuing care funding from the NHS. The period may be nine weeks or eight weeks. None of those procedures is lawful or fits within the guidance that the Department issues. How can that be allowed and tolerated and what is being done to change it? Will the Minister tell us today where the Government have got to with their long-awaited review?
This is an important area of public policy. Parliament should be debating it, and the Government should focus their attention on it, whether through a Minister or a national service framework for palliative care—I think that the latter is more likely to pull the threads together than simply having a figurehead. It is right and proper to have this debate. We need to see the funding put in and the services developing. Of those people who could benefit, only 1 per cent. benefit from palliative care in this country. That is an appalling indictment. More people must benefit from such services in future.
3.3 pm
Mr. Simon Burns (West Chelmsford) (Con): I congratulate my hon. Friend the Member for Castle Point (Bob Spink) on giving us the opportunity to have this important debate, which has generated considerable interest, shown not least by the number of hon. Members who wished to take part in it. I was particularly pleased that he secured the debate because he rightly and with justification spoke about the Little Haven children's hospital in his constituency, in the south of Essex. I welcome and recognise what he said about the excellent work that that hospice does because it also serves my constituency, alongside the children's hospice based in Cambridge, which also provides that service.
Along with many other hon. Members who have contributed to the debate, I have an adult hospice in my constituency, Farleigh hospice, which has done a
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fantastic job during the past 18 to 20 years in looking after adults in need of palliative care. Like all hospices, it works day in, day out, through the tremendous work that the staff do in the hospice, and also through the work of an army of volunteers who help with the running of the hospice and, equally, with fundraising.
We all know from our own experiences in our constituencies how extremely expensive it is to provide palliative care and the extent of the demands on that service. Public-spirited, generous individuals do amazing work day in, day out, coming up with novel ideas for raising money to help to ensure that this fantastic endeavour continues providing a seamless service for some of the most vulnerable members of our local communities.
The extent of the work that is done up and down the country is tremendous. Let me give just a few figures. There are 216 adult hospitals with palliative care units in the country, with 25 for children alone. There are 3,096 beds, with 196 beds on top of that for children. There are 51 beds per 1 million of the population. The average size of a hospice is 15 beds, seven for children. The most common size of a hospice is 10 beds. The estimated number of admissions per year is 59,000. The estimated number of new admissions is 41,000. The mean length of stay is 13 and a half days. The estimated number of deaths in palliative care in hospices is 29,000.
That is a tremendous input into the entire provision of palliative care. Like other hospices, Farleigh hospice has been fundraising over the past few years so that it can move from its existing site. It has secured a site by Broomfield hospital, which is part of the Mid Essex Hospital Services NHS Trust, and it is building a far larger hospice by private donation, having raised a considerable number of millions of pounds with help from other areas. That is the way forward because the demand for palliative care is always going to be increasing.
Therefore, we return to one of the common themes that has run through this whole debate, which is the question of funding. Few if any people within the hospice movement would want to see 100 per cent. funding from central Government. That is not the aim, or the aspiration of the hospice movement. What the people in that movement believe is that they need their efforts—their fundraising efforts, and the time and energy they put into making sure that the palliative care in the hospices is second to none—to be recognised more in financial terms by the Government. That would help to ease some of the pressures that are placed on them to raise what are phenomenal sums of money in order to keep the hospices running. The hon. Member for Battersea (Martin Linton) said that he took part in the London marathon, that he raised £4,000 or £4,500 for his local hospice, and that that was equivalent to about half a day's running of the hospice. That figure puts into perspective the sheer extent of the costs.
Other hon. Members talked about the money that the NHS has made available to the hospice movement over the past six or seven years. I am not going to claim that the Government have cut the funding to the hospice movement, because they have not. However, the Minister will recognise that, as a number of my hon. Friends and others have said, the contribution that the NHS makes to the hospice movement fell between 1996–97 and 2001–02 from about 35 per cent. of the
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costs of running a hospice to 29 per cent. That proportion has improved somewhat since 2001–02, because the Government made £50 million available for palliative care. Even so, the figure is still somewhere between the top end of 32 per cent. and 33.33 per cent., which is lower than in 1996–97—it was 35 per cent. then.
Part of that problem is simply that health service inflation is considerably higher than the retail prices index, or other methods of managing and assessing inflation. The Government must consider that again, not only for adult services but, as several hon. Members have said, for children's services in particular. For the average funding for children's hospices coming from the NHS to be 5 per cent. is unreasonable, as I am sure the Minister will accept. That is why my party made a manifesto commitment at the 2001 election that the NHS contribution to the hospice movement—both adult and children's hospices—would be 40 per cent. of the running costs if we were returned to government. That remains our pledge for the next election, because we recognise the important role that the hospice movement plays in the provision of palliative care.
I want to consider two other funding matters. The first, which many hon. Members have raised, is the fact that many hospices do not cover just a single constituency, a single PCT or even, in some cases, a single strategic health authority area. In my area, mid-Essex, the Farleigh hospice has to deal with at least five PCTs. It is important that Ministers in the Department of Health look at that again. I am not arguing that they should take away the powers of PCTs, because they were established to devolve powers to the localities, so that local people could take local decisions to meet local health needs and commitments. However, I am arguing for some rationalisation, so that there is more consistency and ease for hospices to deal with PCTs as a group, rather than having to deal with each, one by one.
The second problem, whose resolution would greatly benefit the hospice movement, is that, more often than not, particularly because of the financial pressures on PCTs, it can be late in the day—even early in the next financial year—before they decide what to fund their local hospice with. That causes problems with the provision of service.
The Government, to their credit, have changed the system in other sectors of health provision, so that announcements are made on a three-year rolling programme of future funding, which gives more stability and more opportunity for planning. That is a positive step, and I ask the Minister to examine whether it would be possible and reasonable to bring in such a mechanism for PCTs when they consider funding for hospices. That would give hospices more security and enable more straightforward future planning.
There is a gap in the hospice movement in provision for the age group of 18 to 40-year-olds. There is only one hospice in England that caters for that group, based in Oxford. There is a significant difference between the needs of that age group and those of the more elderly population and children. That was brought home to me by a constituent, Mrs. Whiffen, whose son Jonathan died aged 19 from a degenerative disease. He was looked after in the children's hospice in Cambridge for some years, but when he became 16 or 17, he and his mother felt that he had outgrown the services there. The service
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had been wonderful for him until then, but now that he had grown older, he felt that it provided more of a children's environment.
Mrs. Whiffen was concerned because, when Jonathan went to an adult hospice, the average age of the patients being cared for there was 72, a considerable jump for a teenager. She feels—there is some justification for this—that more needs to be done to meet the requirements of that age group, rather than placing those young people in hospices where the population is of a more mature age, and where their needs and desires might conflict with those of more mature individuals. She is trying to do something about that in the Chelmsford area by seeking to raise funds to set up a hospice somewhere in mid-Essex to replicate the services provided by the hospice for young adults in Oxford. More must be done in that field.
Lady Hermon : Will the hon. Gentleman give way?
Mr. Burns : If the hon. Lady will forgive me, I will not because I have spoken for my time and I do not want to encroach on the Minister's time.
In conclusion, no one in this debate has questioned the dedication, hard work and fantastic achievement of all those involved in the hospice movement and that field of palliative care. We just ask the Minister, who I am sure recognises and accepts many of our arguments, that more be done to meet the financial costs of providing that fantastic care.
3.15 pm
The Parliamentary Under-Secretary of State for Health (Miss Melanie Johnson) : I join all other Members in congratulating the hon. Member for Castle Point (Bob Spink) on instigating today's debate. I know that he takes a keen interest in this issue, and it is obvious from the quality of today's contributions that many other Members also take such an interest.
Like other Members, I acknowledge the outstanding work done by all in the hospice movement who care for those in need of specialist palliative care. I entirely endorse the closing remarks of the hon. Member for West Chelmsford (Mr. Burns) on their role. The contribution of the voluntary hospice movement cannot be overestimated, and our partnership with it is very important. I recognise that the voluntary contribution to hospices is a tremendous strength of the movement and a tremendous success, and I recognise the big role that voluntary activity in hospices plays in our lives.
For adult hospices, the partnership that I mentioned has been strengthened nationally through the joint NHS-voluntary sector national partnership group for palliative care, chaired by the national cancer director. That group includes representatives from the local voluntary sector, NHS hospices, Help the Hospices, the Independent Hospice Representative Committee and the National Council for Palliative Care. At a local level, cancer networks have established effective partnerships for service planning and provision, ensuring that local voluntary and statutory sector services work in effective partnership and co-ordination.
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On the children's palliative care side, the Department has observer status on the council of the Association for Children with Life-threatening or Terminal Conditions and their Families, and we are in regular contact with the Association of Children's Hospices. We have worked with the council and the association to promote children's palliative care and sponsored projects being taken forward by both organisations. We have also worked with the New Opportunities Fund, which has been mentioned, and which is providing important funding for projects in support of children with life-threatening illnesses.
In passing, I want to address the question of a Minister for palliative care. I am the Minister with responsibility for adult palliative care, and my colleague the Under-Secretary of State for Health, my hon. Friend the Member for South Thanet (Dr. Ladyman), is the Minister who deals with children's hospices. I realise that an argument is being advanced in this debate for putting those roles together. However, my betting is that had we done so, various people would have bobbed up in this debate to make a point about the need to separate children and adults because their needs are very different. I have just heard a version of an argument about why such roles need to be separated, because of the needs of different age groups.
There is no easy way of cutting up this particular cake to find the best possible answer, but what we have is in my view the right approach—considering the needs of children in this area alongside those of all children, who are, broadly speaking, very different from adults. I take the point that we are not yet necessarily meeting the needs of adolescents, nor perhaps of people in their early 20s. I am not quite sure about the age band mentioned by the hon. Member for West Chelmsford, but I fear that my children of around that age would not really identify themselves with people aged 40. I am sure that there are others in a similar position.
The work of the Select Committee on Health has been extremely helpful. The Committee has praised the initiatives to double the palliative care work force and the £50 million extra investment that has already been mentioned, and particularly the funding for black and ethnic community projects and services for children. The Committee and we accept that more needs to be done, and we need to ensure that integrated services are in place to meet the needs of patients who are receiving palliative care, regardless of their diagnoses. We all recognise that a lot of the palliative care is still provided to cancer patients, certainly on the adult side, but less on the children's services side, where there is a greater mix. We need to recognise that there are issues. The question of the integration of services remains a high priority for the Government.
I should like to deal briefly with a couple of points about adult hospices before moving on to children. First, I recognise that some of the points made and concerns expressed about funding relate both to adults' and children's hospices. Those arguments have been advanced in both quarters, although they have been advanced particularly in relation to children's hospices this afternoon. The 2000 NHS cancer plan pledged to increase the funding for specialist cancer care services for adults by 2004, with the £50 million that we have put in. That additional funding is for services in their entirety, and not only for hospices. It helps to tackle
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inequalities in access to specialists in palliative care and enable the NHS to make a realistic contribution to the costs that hospices incur in providing agreed levels of service. We have met that commitment and ensured that the moneys reach the front-line services. We set up a central budget for three years to do that, which has ensured that the money is protected.
Mr. Burstow : Does the Minister agree that, because the money is being channelled to provide services for cancer patients, it excludes everyone else—the 300,000 people a year who have degenerative diseases, but not cancer, and who would benefit?
Miss Johnson : The money is for specialist palliative care, and although it comes from that route, there will be flexibilities.
Mr. Burns : Will the Minister give way?
Miss Johnson : I would rather make some progress, because hon. Members have raised so many points that I do not have the chance to answer many of them in any case.
Mr. Burns : Will the Minister answer on funding?
Miss Johnson : I am coming to that.
Before the additional funding was granted, independent adult hospices received an average of 28 per cent. of their annual costs from the NHS. That percentage has now increased. Although we do not have the final figures for the whole country, preliminary data from monitoring in 2003–04 shows that £24.5 million or 54 per cent of the £45.8 million reported on so far has gone to voluntary sector organisations, and mostly to hospices. Some £8.2 million has supported new developments and £16.3 million has supported existing services. The remainder has supported services in the NHS, or if it has not been spent in-year, it has been protected for future use for palliative care. The £50 million is recurrent in the PCT baselines.
Mr. Burns : The Minister said that the figure was 28 per cent. and that it rose, but everyone else understands that, as a proportion of the total cost, it was 35 per cent., dropping to 29 per cent. by 2001–02. Why is there a discrepancy in the figures?
Miss Johnson : The hon. Gentleman will understand that if a huge amount extra is put into in the NHS, as we have been doing, the proportion may drop when one looks at the whole. There is an increase in the funding for hospices coming through the routes about which we are talking, as I said a moment ago.
Mr. Burns : Will the Minister give way on that point?
Miss Johnson : No; I have seven minutes in which to deal with a lot of points.
On three-year funding and the short-term issues that all the hospices need to address, the PCTs have received the three-year funding and have already got £50 million extra, specifically for palliative care for the three years between 2005 and 2007–08. There is no reason why they
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should not make commitments in the longer term, rather than year by year. We recognise that there is a need for more funding, but we have met the commitment in the cancer plan, and PCTs must assess their local priorities. Hon. Members are adopting different attitudes to that issue. On one hand, people are urging us to go down the road of devolving more responsibilities to a local level, as we are rightly doing, and at the same time, whenever there is an issue on which people want to see a change locally, they are coming back to the centre of Government, saying, "You should legislate on these matters and provide central direction."
We believe that payment by results will be important in future and will radically change the arrangements for funding care providers. It will comprise a nationally set tariff for most service activity, including services provided by voluntary or independent sector providers, and it will be built on treatments and activities called health care resource groups. We remain on course to implement payment by results for adult palliative care in the NHS and the voluntary sector by 2008–09. A lot of work is under way at the moment, including that of the national partnership group, which is working to validate the costs incurred by a range of hospices. That work will inform the development of the health care resource groups.
Much of the debate has concentrated on children's hospices. The hon. Member for Castle Point has previously made points about the need to provide a general uplift in funding for children's hospices, and that has been the theme of some of the contributions this afternoon. However, he has made the assumption that a central funding directive would offer a practicable method of achieving that. On previous occasions, it has been suggested that we should base such an uplift in funding on some predetermined linkage to adult hospices or on a pre-set percentage of hospice running costs, rather than allow the level of NHS funding to be determined by NHS servicing arrangements.
Although I entirely share the hon. Gentleman's desire to see the children's hospice movement succeed, I cannot agree with the proposed solutions. Children's palliative care involves a much longer-term provision than adult palliative care, and it is structured around the successful management of serious chronic conditions at home rather than in the hospice. As Members have seen for themselves, such care is about promoting the quality of life associated with domesticity, social interaction, growth, increasing independence and the customary pursuits and developmental achievements of childhood. As a number of Members have commented, it is as much a celebration of life as anything else.
Support measures in the children's home, access to education and social activity are all key to that achievement, and it is important that the PCTs ensure that provision is properly balanced and that there is full availability of home care in their areas. Directions to PCTs to fund hospices by some given percentage could easily unbalance the essential mix of care, and favouring hospice care over home care could diminish the latter. The majority of child and adolescent deaths occur at home; a mistaken comment was made about that earlier. Linking the level of funding for a children's hospice to that of an adult hospice would ignore local perspectives and experience. I am glad that many Members support
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the extra money going into the NHS, although it is not supported equally by all parties when it comes to overall national funding decisions.
On the role of the national service framework for children and palliative care provision, we of course have a role in securing the right level of hospice services for children. That is why there was a module focused on support for disabled children in the recently launched NSF for children. Copies of the complete set of NSF documents are, or will be, placed in the Library. I shall ensure that the hon. Member for Castle Point in particular receives a copy of the disabled child document, which includes a specific section on palliative care and the support of children with life-threatening illnesses. It clearly identifies that high-quality palliative care services should be available for all the children and young people who need them. That goes a long way towards addressing the points made by Members about the need for a clear central statement of what is being called for. That is in the children's NSF.
That section notes that palliative care services are provided by a network of agencies and that close co-ordination and liaison are essential. It also notes the importance that we attach to recognising the changing needs of young people receiving palliative care as they move on from children's services. It therefore goes some way towards meeting the point made by the hon. Member for West Chelmsford.
We are saying clearly that local authorities, PCTs and NHS trusts must ensure that palliative care services provide high-quality, sensitive support that takes account of the physical, emotional and practical needs of the children or young people and their families, including their siblings; that services maximise choice, independence and creativity to promote their quality of life; that services are delivered where the child and the family want them—in the home, hospital, hospice or any other setting; that services include the prompt availability of equipment to support care; that palliative and terminal care services are regularly reviewed with parents, or carers and patients; that gaps in provision are identified or addressed; and that issues such as short-term breaks are also taken into account. In order to help the PCTs in their strategic development of those services, we aim to—
Mr. Deputy Speaker : Order. Time is up. I thank all Members for their co-operation. We managed to hear seven Back-Bench contributions and four interventions from Members who did not contribute. It is thanks to the co-operation that has been given that we have managed it.
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